It's All Happening!

New diagnosis and before diagnosis
1

Hi all, since my formal DX in May, things are moving along. Neuro wrote to GP recommending Nortriptyline to help nerve pain and sleep.

He recommended that I consider Ocrevus as first choice, or if not then Tecfidera, to be started ASAP.

After about 10 days on Nortrip, have slowly titrated from 10mg to 20mg - nerve pain still present but kind of fuzzy if that makes sense??

Sleep - what’s sleep!!! Absolutely no benefit noticed whatsoever unfortunately.

Have appt for end of June at “Newly Diagnosed Clinic” run by MS Nurses which is just for general info and told that at the clinic I would be given another appointment with my specific MS Nurse to discuss DMD’s in detail.

So imagine my surprise to receive a letter this morning offering the DMD appt on Weds next week!!! " weeks before the other appointment.

Can only assume there may have been a cancellation…or the mfrs of Ocrevus want some data gathering from my hospital, which is also an MS Research Centre…maybe they are offering a Buy One Get One Free !!! (ha ha ha ha joke)

Like RemixRay, I now have to make a decision, but both of the choices seem equally scary really.

I don’t want my MS to progress of course, but neither do I want some of the risks caused by such strong immunosuppression drugs. There has been a lot of cancer in my family and I’m a bit hung up on it…perhaps more so because my closest friend is currently battling severe bowel cancer.

I shall be interested to find out how they plan to ensure I have no existing malignancies, which is recommended as a necessary pre screening by NICE for Ocrevus.

Yep as you can all tell I’m a little anxious!!! Probably the lack of sleep causing disproportionate worrying though, added to my general loopiness caused by being a lady of a certain age.

I’m not sure how long I can continue on 2-3 hours sleep in every 24 and don’t have very sympathetic GPs at all here :frowning: I’m not sure what the answer is.

Can MS Nurses prescribe does anyone know??

Anyhow, I’ll update next week after chatting with MS Nurse :slight_smile:

Thanks for listening everyone ,

Minnie xx

2

Hi Minnie

I can see why you’re vacillating with the Ocrevus decision. It’s a difficult decision to make, and I can understand it seems quite risky in your situation. I’d have taken it like a shot if I were aged 30 and newly diagnosed. But being of a similar age, and knowing you’ve not had any really disabling relapses thus far … Maybe you need to think about how you’d feel if you were 2 years down the line and had several relapses in the intervening time? What I suspect you should do anyway is have the screening for existing malignancies. Even if you think you might not take the drug anyway. Better to be forewarned.

Meanwhile, do you know why you’ve been prescribed Nortriptyline rather than Amitriptyline? Many doctors think Nortriptyline is better for side effects, but does the same for nerve pain. I was prescribed it years ago for that reason, but when I began seeing a rehabilitation specialist neuro (as well as my existing neurologist), he suggested I switch. He’s been an absolutely brilliant doctor especially for information on drugs. He told me to take Amitriptyline in the evening, but no later than 8pm. That way it does a better job for the nerve pain and for sleep. And taking it early means that you don’t get the next morning ‘hangover’ type effects.

It sounds as though you could do with some help to get a bit more sleep anyway. Perhaps your GP could prescribe something for a short time to help? 2 or 3 hours a night’s not good. And to be wrestling with your diagnosis, your fears for the future and the decision over which drug to take in addition to the menopause isn’t going to help at all. Unfortunately, MS nurses aren’t able to prescribe.

Best of luck.

Sue

3

Hi Minnie, Hi All

I told my MS nurse that I wanted the Ocrelizumab , and I go for screening on the 2 July

Yep, I’m scared - but as my neurologist told me …" either p*ss or get off the pot "

This last relapse is still feeing me 4 weeks after it’s initial appearance ( Still have wobbly eyes , odd pins and needles and really have trouble concentrating

forgot a girls name at work today, then I remembered she said thats not her name, then she said afte 2 mins, yes…that is my name, just joking

I could have hit her !! but violence never solves anything

with regards to the drug…am I doing the right thing ? dunno - just want to have the best chance of avoiding further relapses

will deal with the side effects ( if and when they happen )

buy my eyes are pi**ing me off

Ray

4

Hi Ray,

Glad things are moving along for you :slight_smile: It’s a very personal choice,when opting for a DMD, and I would never say anyone was right, or wrong, for what they choose.

I guess they are all a bit scary - but then so of course are relapses!

I had my appt with MS Nurse Specialist today and she was lovely - she hasn’t yet had any experience of Ocrevus as they have mostly, as a centre, used Tysabri and Lemtrada, but I believe Lemtrada is withdrwn at the moment nationally?

She did say that Tecfidera (My Neuro’s 2nd choice for me) is very well tolerated in all her patients, after a few weeks of some people suffering gastro upsets.

What’s put me off Ocrevus a bit is that NICE recommend pre treatment screening for any existing malignancies, but she said as far as she knows that wouldn’t be in the plan at my particular MS Centre, and neither would I be offered annual breast screening (The research indicates possible increase in incidences of breast cancer on Ocrevus in clinical trials) - and I feel that being over 50 I may already be a higher risk for Breast Cancer. But that’s probably me obsessing!!

So I’m still undecided, but have a further appt at end of month so she said I mustn’t feel pressured (such a lovely nurse).

Please do let me know how you get on as things progress for you!

Minnie

5

Hi Sue,

Chatted with MS Nurse Specialist at my first appointment today, she was really lovely :). She is writing to my GP to ask them (or tell them, she said with an eye roll) to prescribe 10mg Baclofen and 3.75mg Zopiclone, to be used ad hoc, as long as not both on same day. She reckons that way, with the Nortriptyline, I should get some respite from night time spasticity, relief from burning & stabbing pains, - and SLEEP!!

She indicated that she is quite bossy with GP’s, and that she sees people daily who are living with MS, therefore she is better qualified to make recommendations - she said that with a condition like MS, “outside the box” thinking is needed as it is not a textbook condition!!

So I like her very much already!!

The reason we’ve gone with Nortriptyline is because I’m a bit leery about Ami with it’s side effect of urinary retention - as this is something I suffer with anyway from time to time and it feels like tempting fate.

I’ve replied to Remixray’s comment on this thread too, re. DMD’s - and am still undecided, but again, lovely Nurse who said I must be sure and happy with my decision.

On a lighter note, we had a rather raucous chuckle about the effect of altered sensation in the lady bits, and the fact that my leg seems to get the sensations instead during attempted intimacy. My husband was with me and the 3 of us had tears of laughter. She suggested that a “massage toy” might help - which set me off again!!

So an upbeat feel to the appointment overall, which was great.

Oh and she told me (and showed me my MRI scans) that I have a few brain lesions - which the Neuro had not mentioned at all. At which hubby rolled his eyes and said that now I would start blaming every mood swing on MS.

Luckily we have a relationship with a lot of humour.

So, onwards and upwards, hopefully

Minnie xx

6

How lovely to have a good MS nurse Minnie. I’ve often said that a good one is worth her own weight in chocolate!

A nurse who bosses GPs about is exactly what’s needed. And someone with whom you can talk openly and honestly about everything (personal ‘massagers’ included!) is great.

Best of luck with your DMD decision. At least your nurse is on the ball enough to say ‘it’s your decision’ and that you must be happy with that choice.

Sue

7

Hi All

As I said, I have decided on Ocreus - and I have my screening on 2nd July

I think I’m having second thoughts,

just saying…

8

Hi Ray

What’s giving you second thoughts?

When any of us take a heavy duty drug we worry like crazy that it’s the wrong decision. We have to balance out the possible benefits against the risk of side effects.

The potential benefits from Ocrevus are pretty good. Yes, the side effects could be iffy, but try considering the risks of serious relapses and maybe that will help?

I am a definite believer in DMDs. I believe that the right way to attack MS is to hit it with a big stick. And Ocrevus is such a stick.

But you have to be happy with your decision. If you feel that you might be happier at the present time in going for a smaller stick; still taking a drug to reduce number and severity of relapses, but one that’s less likely to give you nasty side effects, then that’s what you should do.

You must be happy with your choice of drug. So feel free to ignore my opinion, your neurologist, MS nurse and anyone else, it’s your body, your MS, your decision. If you have to be quite definite, even a bit defiant about changing your mind about Ocrevus, that’s still your choice.

Best of luck.

Sue

9

Thanks Sue

I suppose I should stop reading the web and just own the decision that I have made with my Husband and MS nurse’s Help

They let me make up my own mind - need to stick with it

as long as I can still go to Greece for my two week holiday in September !

I do agree with the big stick - that’s what helped me make up my mind, all I need to do is think back to how I felt 4 weeks ago !

Just having a wobble !

Ray